Cold Hands and Feet

My hands and feet are always cold. And I mean freezing cold, like I just stuck them in the freezer and left them there for a week. While I've always had naturally cold hands and feet (odd!), I've noticed more now that I'm ill...my hands and feet are colder!!! I could be wearing socks and mittens but it doesn't seem to do a darn thing. The cold still permeates the socks/mittens and you can feel the cold coming off of them.

My hands and feet are always cold. And I mean freezing cold, like I just stuck them in the freezer and left them there for a week. While I've always had naturally cold hands and feet (odd!), I've noticed more now that I'm ill...my hands and feet are colder!!! I could be wearing socks and mittens but it doesn't seem to do a darn thing. The cold still permeates the socks/mittens and you can feel the cold coming off of them.

Anyone else have super cold hands and feet? Or am I just weird?

Click to expand...

I am weird too. My hands (and feet) are cold enough so that nearly everybody's hand that I shake will comment on it. I have very low body temp of 96 deg. Went the thyroid boost route to no avail. I wonder if anybody has been able to correct this too??

I cycle through having cold hands/feet, and being ok. But I have found for me that keeping my fluid intake up in order to stay hydrated and taking EmergenC daily pretty much eliminates my issues with cold AND more importantly relieves/eliminates my restless leg syndrome symptoms. It stands to reason that dehydration leads to muscle tightness/cramping which leads to, or at least exacerbates both conditions.

One oddity I've also found is that wearing socks actually makes my cold feet worse when not wearing shoes around the house. I've take to going barefoot and it probably reduce the issue by 80% where it still remains. Not sure WHAT that's about. I do keep the temp up in the abode though.

I have had that mainly in my feet. Not so much of a problem these days, but used to be in the first 10 years or so of being sick.

I used to wonder if it was just me having some sensory perceptual problem. But I asked a few people to feel my feet, and they all said they felt like blocks of ice. They were seriously cold, almost painfully.

Here is the weird part. It could happen in any weather/climate, including in the middle of steamy tropical summers. Definitely a circulatory problem, I think.

Ok, if we're talking weird, I need to ask if anyone else has only one hand get cold? When I feel the worst, when it feels like my heart is barely working, I get one freezing cold hand, always my left. I'm wondering if it is because of vasospasm. My right one will be it's normal cool, and the left like ice. My husband also has CFS and his feet are always cold (we live in the Deep South)- if he sits upright for more than a few minutes, they turn bluish purple. Sometimes it's just nice to be weird together!

My daughter has very cold hands and feet. She was told it is related to her autonomic nervous system dysfunction from ME/CFS. As I understand it, her body doesn't maintain her blood pressure very well, so she doesn't get good circulation to her extremities, hence the coldness.

She has had less coldness in her extremities since she's been taking Florinef and K-Dur and wearing compression socks. She tried increasing her fluid intake first, but it wasn't enough to deal with her other symptoms. Nevertheless, that would be the first thing I'd try if I had cold hands and feet -- that and increased salt intake (assuming you don't have high blood pressure, of course).

I also have the same problem and have done much research on the topic....the cause is a combination of a dysfunction of the autonimuc nervous system and endocrine system. Many people have this problem go away with supplementing with Iodine such as Lugols or Iodoral......I am starting this tomorrow.

ME causes metabolic dysfunction, that is, our cells cannot finish the process
of making energy properly. This is very dangerous so our bodies take several
steps to stop oxygen getting to the cells. One method is that we get a PFO,
a hole in the heart that causes stale blood to go around again and less
oxygen to get to the cells.

This causes (or is related to) many other symptoms, one of which is poor circulation.
This will be the cause of cold extremeties.

The thing about this illness, is that even if someone has the correct answers, no one
listens as there are so many others doing the same. So frustrating.

BTW I believe using the name chronic fatigue syndrome hurts our cause.
So I always use the name ME.

Ok, if we're talking weird, I need to ask if anyone else has only one hand get cold? When I feel the worst, when it feels like my heart is barely working, I get one freezing cold hand, always my left. I'm wondering if it is because of vasospasm. My right one will be it's normal cool, and the left like ice. My husband also has CFS and his feet are always cold (we live in the Deep South)- if he sits upright for more than a few minutes, they turn bluish purple. Sometimes it's just nice to be weird together!

Click to expand...

Hi 3cfids@ourhouse, when i first read your post it sounded to me like there was probably some kind of blockage in the blood flow to your left hand probably something to do with your heart, if that is worse when this happens. So i've had a look on the net and found a article that says this "If the coldness is limited to one hand it may suggest an acute arterial occlusion of major peripheral artery or peripheral microemboli on that side."

I have this so badly!!!
I've realised after about 30 years that the best thing is to stuff a hot water bottle up my jumper. Aiming to raise core body temperature seems to work better than just trying to warm up the actual chilly extremities. (Though I do always wear really warm woolly socks and slippers too.)

I got very bad chilblains one year and my hands would often bleed from being so frozen outside.

I did have reynauds syndrome when I was a kid. If your hands change colour then maybe get this checked? rolc, Reynauds syndrome is another tink that can make just one hand go cold while the other is warmer.

And lastly, Lyme disease does this too. It can make your limbs change colour. In the clinic in Germay there was a boy who always had purple, I mean aubergine coloured hands that felt like blocks of ice. We (the other patients) used to get round him and rub them but it hardly make any difference. The only thing that helped was getting him to fidget and wave them about as much as possible. It was hard to get him to do this though, he was so ill he was almost catatonic. Sorry, very depressing story.

I have had that mainly in my feet. Not so much of a problem these days, but used to be in the first 10 years or so of being sick.

I used to wonder if it was just me having some sensory perceptual problem. But I asked a few people to feel my feet, and they all said they felt like blocks of ice. They were seriously cold, almost painfully.

Here is the weird part. It could happen in any weather/climate, including in the middle of steamy tropical summers. Definitely a circulatory problem, I think.

Click to expand...

It most often, for me at least, doesn't hurt but there are moments where if I move my toes (it doesn't happen on my hands), the toes are SO STIFF.

And yes, it happens to me in ANY climate. When the summer roles around and it's 90 degrees F, my feet will still feel like they're frozen.

SickofCFS said:

My daughter has very cold hands and feet. She was told it is related to her autonomic nervous system dysfunction from ME/CFS. As I understand it, her body doesn't maintain her blood pressure very well, so she doesn't get good circulation to her extremities, hence the coldness.

She has had less coldness in her extremities since she's been taking Florinef and K-Dur and wearing compression socks. She tried increasing her fluid intake first, but it wasn't enough to deal with her other symptoms. Nevertheless, that would be the first thing I'd try if I had cold hands and feet -- that and increased salt intake (assuming you don't have high blood pressure, of course).

Click to expand...

My blood pressure was a problem in the beginning (it was too low and when it would go up to "normal", I would feel awful!) but now it's pretty much under control. I've increased my fluid intake and increased my salt intake; and I also take Florinef. So it seems that I have to test some other things out. Not that the cold hands and feet really bother me that much, just curious.

It most often, for me at least, doesn't hurt but there are moments where if I move my toes (it doesn't happen on my hands), the toes are SO STIFF.

And yes, it happens to me in ANY climate. When the summer roles around and it's 90 degrees F, my feet will still feel like they're frozen.

Click to expand...

Hi InChristAlone, I too have the stiff toes, and sometimes this goes half way down my feet. I think this is linked to small fibre neuropathy, but I am unsure. I regularly stretch my toes and feet just to keep them functional. This stiffness has nothing to do with temperature - my feet are not cold, in fact right at this moment they are hot (to touch, not just burning feet syndrome). I wonder if this is neurological, or due to elastase reducing elasticity, or some other reason. I also get lots of microbruising, so parts of my feet looked tanned from all the broken blood vessels.

Hi InChristAlone, I too have the stiff toes, and sometimes this goes half way down my feet. I think this is linked to small fibre neuropathy, but I am unsure. I regularly stretch my toes and feet just to keep them functional. This stiffness has nothing to do with temperature - my feet are not cold, in fact right at this moment they are hot (to touch, not just burning feet syndrome). I wonder if this is neurological, or due to elastase reducing elasticity, or some other reason. I also get lots of microbruising, so parts of my feet looked tanned from all the broken blood vessels.

Bye
Alex

Click to expand...

Hmmm...that's interesting. Though I never have stiff toes unless my feet are the freezing cold that they most often are (there are some times though when they aren't, thank God!). I'll have to do some research on it and ask my doctor what's up because maybe, she knows.

I also have the same problem and have done much research on the topic....the cause is a combination of a dysfunction of the autonimuc nervous system and endocrine system. Many people have this problem go away with supplementing with Iodine such as Lugols or Iodoral......I am starting this tomorrow.

Click to expand...

Did you gain any benefit from Lugols...i have this same problem with a.n.s/endocrine..... i have jst been reading about lugols,.. and wondered if anyone had any success? .....Kindest Regards

One of my worst problems is feeling cold all over most of the time. It's particularly bad in the mornings. Even wearing several jumpers in bed with a hat over my ears and the heating full on doesn't help. Sometimes my teeth are chattering.

I think it makes me feel tense too, and worsens the stress of the illness.

I've just started potassium iodide - anyone had any improvement with that?

One of my worst problems is feeling cold all over most of the time. It's particularly bad in the mornings. Even wearing several jumpers in bed with a hat over my ears and the heating full on doesn't help. Sometimes my teeth are chattering.

I think it makes me feel tense too, and worsens the stress of the illness.

I've just started potassium iodide - anyone had any improvement with that?

Jenny

Click to expand...

Hello Jenny,

I believe from my recent reading,...that potassium iodide is a component part of Lugols iodine, the other being iodine crystals....anyone with more knowledge please correct me if i got it wrong!....

I really hope you find improvement,...and please keep us all updated on its effect.I would be really interested to learn more.

I know that coldness you mention,even in a warm place.....and agree it increases feeling of being tense/feeling worse.

Some days I just feel different than most of my days and it's these days that I have very cold hands and feet.

Just an add, from the beginning of this disease I have had cyanosis on the soles of my feet. The cold hands and feet have no relation as far as I know. I've had several test and they all have been normal. Only comments was from heart specialist that speculated that it had to be a microvascular condition due to perfusion test and there was nothing else to try (took beta-blockers with no effect at all). It is only on soles of feet when I am sitting, I have it standing but it is barely noticable.

My feets have been cold for 20+ years.
I went through the ice in the winter, and they did not get warm again.......sort of
Can sit in a sauna and sweat all over, but on the middle of my legs (half way down from the knees) you can feel it going from hot to cold
Really weird

Funny thing is, that my feet are usually ok in the morning, or when i get out of bed.
I can get up, and place my feet in a warm footbath emediately. But they still go cold. If i had stayed in bed.... they would have bee fine
hehe
But, i have to get out of bed and move to the sofa, to get the fealing of actually doing something

I have the cold hands and feet sporadically, but it seems to be aggravated by two different things. If I forget to take thyroid meds for a couple of days it starts to flare which I would expect.

I also have the cold hands and feet when I go through episodes of excitation of sympathetic (parasympathetic?) nervous system, which is causing vasoconstriction of small capilaries(?). The perfusion in my feet becomes very slow and can get the blue/purple color in them. I also tend to have flushing and a feeling of heat in my skin and I suspect this is stemming from malfunctioning adrenals. I would like to have my norepinpherine checked while this is going on, but I don't think there a very accurate test for it. I also have very low dhea-s and cortisol levels.